Celiac Artery Aneurysm

Posted by Jen @jurney01, Jul 23, 2016

Hello! I was recently diagnosis with a celiac artery aneurysm in June 2016. I underwent a embolization w/ coils procedure since the aneurysm had grown while in the hospital. I was trying to reach out to someone who suffered the same illness but have not been lucky. I would like to locate someone with my same illness. I would appreciate any help. Thank you

@clevelandpatient

Can someone please explain to me what this means and how serious is this?

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Hi @clevelandpatient , very nice to meet you! It sounds like you are dealing with an inflammatory vascular disease. I do know of a vascular doctor at the cleveland clinic that would be able to help you navigate your diagnosis. (By your user name I am guessing you are near Cleveland,Ohio?) The vascular doctor is Dr. Heather Gornik, and that is who I would see if I was in Cleveland. Here is a link: https://my.clevelandclinic.org/staff/6671-heather-gornik

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@kariulrich

I am wondering if anyone diagnosed with celiac artery aneurysm have an underlying disease?

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Hi, i was diagnosed with a 2cm celiac artery aneurysm 4 years ago. Im 57.

It is definately hard to find any recent research. I am going in this morning for my biannual CT angiogram, hoping that it hasnt grown. I was so glad to find this board because of its rarity and how its presence seems to linger in the back of my mind. I live in Utah so i had to go to Mayo once it was discovered. Originally it was for surgery because 2cm is the size which intervention is needed. They then said that it was only 1.4 cm wide and 2cm long, so i went on the watch and weight program.

Its not a diagnosis that sits well. They say that since there is not that many cases the data of rupture is just not available, but that the science behind the wall pressure and such makes watching less of a risk.

I dont get pain that often, but when i do its always a uneasy feeling and reminder when you know that the mortality rate if ruptured is high.

So, i guess we are just a special group of humans that must take life as a precious gift regularly. And do our follow-up as needed. Like i said, its been over 4 years and my lil guy hasnt grown at all, so maybe it never will and ill live to be a crotchety old man.

Warm regards,
Chris McArdle

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@kariulrich

I am wondering if anyone diagnosed with celiac artery aneurysm have an underlying disease?

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Thank you so much for your reply. It helps to know at least one other person has the same issue. I’m glad to hear your not having additional issues. I go back for follow up CT in December. After 4 months from onset there was significant remodeling so my artery is only about 15% reduced compared to original scan. They now say I could have a stint if needed instead of surgery. So we will see what time brings. I try not to think about it too much since I really can’t do anything to effect the outcome anyway. Just live my life as best I can.

Good luck and continued Health.

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@kariulrich

I am wondering if anyone diagnosed with celiac artery aneurysm have an underlying disease?

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Hi @onemind711,

My sincere apologies for the tardy response, but somehow your post slipped past! I’d like to extend a warm welcome to Connect, and thank you for sharing your story.
I really do like the phrase, “special group of people” because you and the Connect community are exactly that: a special group of people who have each other to share with, learn from and find support.

You may be interested in reading this recently published study and case report about celiac artery aneurysms: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5348600/

@onemind711, what do you do to get relief from the pain when it occurs? Only if you would like to share, may I ask if about your most recent appointment?

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@kariulrich

I am wondering if anyone diagnosed with celiac artery aneurysm have an underlying disease?

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In my case the pain has not come back since the initial onset and discovery. They gave me some morphine and after that it was gone. I had a small amount of discomfort for about a week and then nothing more. They put me on blood pressure medicine so now they only want me to take acetaminophen instead of aspirin. It never seemed to do anything for me prior to this and I previously used aspirin. It seems to be working OK for headaches and such. My last CT showed significant remodeling. so instead of having 80% of the artery swollen and possible blocked its down to 10-15%. They now say they can put in a stint if needed where prior to this the only option was surgery. Follow up CT in December.

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I also was just diagnosed with the Rare celiack annurismal artery1 cm this week while at the ER for extreamly HIGH BP and Heart Rate no lower then 99 at rest yet that night it was 124 bpm crazy feeling i have taken 4 diffrent EKG and all test are abnormal my doc put me on a beta blocker yo control the heart rate BP and anxity so this thing don’t blow i have a cardiologist apt on monday oct23 also have enlarged bile and pancreatic Ducts along with a pancreatic division. I have a FH mutation called HLRCC with multiply leasions in my kidneys 2 in my spine and had 2 huge ones removed with a full hysterectomy except for overies does anyone else have any other issues that may be linking this

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Any good information of any kind.

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@geor

Any good information of any kind.

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Hello @geor! Welcome to Mayo Clinic Connect. We’re happy to have you here.

You will notice that I moved your question to a thread that already exists on Celiac Artery aneurysm. Here you will be able to meet other members and read about information and experiences.

can you tell us, is the information you are seeking for yourself? or a family member?

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I just want to stop this loose stools to stop

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@colleenyoung

Jen, like @hopeful33250 I too would like to get to know about you. I didn’t find another Connect member with a diagnosis of celiac artery aneurysm. As you point out, it is very rare. But given that the celiac artery is the first major branch of the abdominal aorta, I thought you might appreciate the introduction to a few members who have recently been talking about living with an abdominal aortic aneurysm. Please let me introduce you to @janetpomponio @kdh1 @playsdixie @elsinann and @lynnkay1956. You may also wish to read this older and ongoing discussion http://mayocl.in/1WX0ypo

Jen, are you a candidate for surgery?

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Hello. I read your post and found it interesting. I was diagnosed with a celiac artery aneurysm about 5 years ago and it has been stable up until now. I am going in next week for an update (last was in 2015). I was reading up on it again before my appt. and saw your post about your surgery. I was wondering how that was? Difficult? Quick? Quick recovery? Dangerous? WAs it a small incision? I was curious about the options they gave you about the repair. Thanks.

Liked by Jen

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I was diagnoses with celiac stenosis and aneurysm in Dec. 2017 after severe abdominal pain and a splenic infarction. I was hospitalized and put on blood thinners. I am not on anything now and seem to be doing well except for occasional discomfort in my left side (upper quadrant). Like you I feel like I am walking around with a time bomb inside and don't know what to expect. It is helpful to read what others are going through. I will have a follow up once a year but even my doctors have not seen a lot of this. My husband wonders if we should go to Mayo or Cleveland for a second opinion even though I have excellent doctor at Emory Hospital. Thanks to everyone for sharing their experience. Mary

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Hi Mary @marylisa! Welcome to the group! Thank you for posting.

Being an advocate for your own healthcare should always be number 1. Even though you have an excellent doctor at Emory- you may have luck finding a physician that just happens to have another plan that may work. At Mayo, sometimes before an appointment can be set up, physicians will review medical records and decide if a patient should be seen. Would it hurt to have your medical records sent to a specialist at Mayo or Cleveland and ask to review? Just a thought.

While waiting for other members to reply- what have you found most helpful in handling symptoms? Do you experience anxiety with not knowing what to expect?

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Jamie, Thank you for responding to my post. Your thought about having another opinion is helpful and I will consider that. Keeping my stress under control has been helpful for handling symptoms and just knowing they will pass. I try to do the usual self care stuff like yoga, walking, eating well, have people to talk with (that is why I was excited to find your group). And if the symptoms don't pass, I guess that is when it is time to get back into the doctor. Now that I know what the symptoms are, they are less frightening but I do still experience anxiety at times. I am curious as to how others handle this 'not knowing'.

Liked by Jamie Olson

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@hopeful33250

@jurney01 Hi Jen: I just saw your post regarding your health problem. I’m so sorry to hear about that, but I’m glad that you were able to have a procedure to help. While I’ve never been diagnosed with this, I also have a rare disorder, Neuroendocrine tumors, and I know how important it is to connect to others who are also going through something similar. Hopefully, someone on Mayo Connect will be able to relate with you and share their experiences. I see that you just recently joined Mayo Connect so let me welcome you to this very supportive, encouraging community. We are here for each other and learn from each other!

I “googled” the disorder and I see that is very rare. If you would like to share your experience, please let us know how your doctor found this aneurysm and if you were having specific symptoms or if it was just found incidentally. Best wishes to you as you share your experience and find help and support from others! Teresa

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I read your post, and I think, that I will be diagnosed with something similar. It is very frightening, when you feel your heart rate on top of your stomach and you have terrible pain in that region. It also can affect your liver and pancreas. I am having an ultrasound done in our hospital to follow the bloodvenes around the aorta. Hopefully, the pain has come from someplace else! But it is frightening. Let me know, what happened to you,

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How often should your surgeon have you in for a check.

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